Deniliquin helps fund important research

By Deniliquin Pastoral Times

The local community is being applauded for the role it has played in supporting research into Charcot-Marie-Tooth disease, and supporting young people who have it.

Deniliquin helped contribute to a $14,808 fundraising total which helped send teenager Sarah McIntyre, who suffers from the degenerative disease, to a CMT camp in England.

The local fundraising was coordinated by her grandparents, John and Denise Thomas.

The trip cost $7000 and the remaining $7808 was donated to CMT Research Australia to help find a cure.

Mrs Thomas said the support was so significant, the fundraising efforts were officially noted at the recent Charcot Marie Tooth Association of Australia conference in Hobart.

Mr and Mrs Thomas attended, as did Sarah and her mother Kylie McIntyre.

‘‘At the conference our donation was gratefully acknowledged and everyone involved in the donation effort was thanked enormously,’’ Mrs Thomas said.

‘‘It was especially satisfying when it was announced where the money would be allocated. Each year the research team puts in a request for funds for a project they are working on in their efforts to find a cure for CMT.

‘‘The association chooses one project and this year it was for research being undertaken by Professor Brent Neumann who is head of the Nervous System Development and Repair Laboratory, Biomedicine Discovery Institute at Monash University.

‘‘Dr Neumann had requested $14,000 and the association had raised $7000. With our donation of $7808 they were able to assist the doctor with his great work.

‘‘We made this donation in the name of Deniliquin, and the McIntyre and Thomas families.’’

Mrs Thomas said being able to help their granddaughter was a proud moment. But as a sufferer of CMT herself, she said it was also a great chance to raise awareness.

‘‘Charcot-Marie-Tooth disease is a degenerative disorder of the peripheral nerve affecting both sensory and motor nerves. So it really affects your arms, legs and feet as it progresses in age,’’ Mrs Thomas said.

‘‘We made a concerted effort to raise the total amount through raffles, high tea, tours and various money tins around town.

‘‘To go on the trip you had to raise the $7000. We thought we would do better, but we never thought we would make so much.

‘‘John donated a pedal car, tricycle and scooter from his big vintage collection for a raffle. We set up stalls and took tickets everywhere to sell.

‘‘My daughter held a high tea at her house for 75 people which raised about $4000, which was a major help. She also helped sell our raffle tickets.

‘‘We held a day touring Moira with morning tea and another day at the Timbercutters Cafe where they gave us the space for a reasonable price, which really got us going.’’

Sarah was one of nine Australian children who attended the camp in July, which was also attended by 37 English children with the same disease.

Sarah said aside from having fun at the camp in Keswick, England, she got to visit London and Buckhingham Palace, Brighton and even the home of William Shakespeare at Stratford.

Sarah also visited Wales and Scotland.

Mrs Thomas said she will continue to raise money to help CMT continue its research, and help other children attend the CMT camps.